How employers can help parents of children with Type 1 diabetes
October 30, 2023
For plan members, sponsors and administrators
Insulin delivery systems and other game changers
Elizabeth Scott is a Digital Content Strategist at Manulife. In this post, Elizabeth shares her experiences and some of the valuable insights she gained from raising two children with Type-1 diabetes.
Pavithra Ravi is a practicing pharmacist and teaches at the University of Waterloo School of Pharmacy. She is also Director, Strategy and Key Accounts, for Manulife Group Benefits.
Type 1 diabetes
Globally, rates of Type 1 diabetes in childhood are rising every year by 3% to 5%, and the prevalence in Canada is among the highest in the world at 250 per 100,000 people.1 As a result, it’s possible for employers to have one or more employees parenting a child with Type 1 diabetes. Here’s a window into what that parenting experience looks like, along with some ways employers can support employees who are managing Type 1 diabetes within their families.
A working parent’s experience
Elizabeth Scott’s older son was just 20 months old when he was diagnosed with Type 1 diabetes (also known as juvenile diabetes), and her younger son received the same diagnosis at age 14. Both times, Scott, now a Digital Content Strategist in Manulife’s Canadian Division, managed the costs and stress of this chronic disease while working at a job that didn’t offer group benefits coverage.
She says it would have helped her a lot to have had access to an employee assistance program, like the one now available to her through work at Manulife. She suggests that employers should encourage parents to reach out for available supports, because some don’t have a strong local family-and-friend network. Many are hesitant to access such resources or don’t know they’re available, she points out.
Challenges of Type 1 diabetes
“Not everyone understands, in the day-to-day, how challenging it can be caring for a child with Type 1 diabetes, and that it’s not only a matter of giving your child a needle in the morning and then they’re good for the rest of the day,” says Scott. “There’s always a worry about them having a [blood sugar] low at a time when they can’t get treatment or look after it … and, after all these years, I continue to worry about my sons’ long-term health and the stress they have to live with looking after their diabetes.”
Scott adds that she would also have benefited from help paying for Type 1 diabetes insulin, test strips, and in particular glucagon for emergency use. Glucagon injects glucose into the bloodstream to help raise blood sugar levels quickly – but it expires. 2, 3
“There were many years I went without buying it because I couldn’t afford it, [and] there was one occasion when I couldn’t get [my oldest] to consume anything and that’s when I had to call 911,” she recalls. “I had actually handed him a piece of bread with honey on it, and I was trying to get him to eat it, and he was holding it in the air in front of himself and looking at it – but he wouldn’t put it in his mouth! The paramedics injected him with glucagon and it was like he woke up. Two paramedics and two firefighters were in his room, surrounding his bed. He just looked around and said ‘hello,’ and everyone felt relieved [that] he was back.”
Employers who offer flexibility to parents who care for children with Type 1 diabetes are providing much-needed support, says Scott. Emergencies can happen, but knowing it’s okay to leave work to help manage a child’s health issue is important – even if an employee never needs to take advantage of that option.
Continuous glucose monitors a game changer
In Type 1 diabetes, the pancreas no longer produces insulin, the hormone needed to turn food into energy. That means patients need injections of insulin at levels that vary based on the individual, what they eat, and how active they are. Continuous glucose monitors (CGMs) can take some of the guesswork out of how much and how often a person needs insulin, says Pavithra Ravinatarajan, a practising pharmacist and Director, Strategy and Key Accounts, for Manulife Group Benefits.
Ravinatarajan notes that before insulin (closed loop) pumps and CGMs (devices that can act independently but sometimes communicate with each other in a hybrid loop system), people with Type 1 diabetes generally had to use syringes to inject themselves with a mixture of long-acting and short-acting insulin three or four (or more) times daily to manage blood sugar levels in day-to-day life. They’d also have to plan to have regular snacks, glucose tablets or something to treat a low blood sugar handy, and they’d have to organize activities carefully for low versus high-energy days and times of day – to avoid low or high blood sugars as much as possible.
“If you ran track and field or anything like that, you’d have to be very cognisant of checking your blood sugar with a prick [of the finger to draw a drop of blood] half an hour before you’re going to run, right before you’re going to run, and after,” Ravinatarajan says from her Manulife office. “But as technology has advanced, we’ve come to CGMs – a device you can either put on your arm or on your abdomen [with a tiny needle that stays in place just under the skin] that measures glucose levels in interstitial fluid. It’s not always as accurate as if it were to hit blood, but it’s very similar,” says Ravinatarajan.
Critically important for parents of young children is the fact that CGMs provide monitoring 24/7, including overnight. Some CGMs can automatically send alarms to a caregiver’s phone so they can quickly get to their child to treat a low blood sugar event before it becomes an emergency, even if the child is sleeping.
Ravinatarajan notes the costs of different insulin pumps and CGMs are similar, but she says it’s important to choose the best one based on individual preferences. The size of the pump and how it’s worn can matter to a child, based on clothing preferences (e.g., so the pump is less noticeable) and day-to-day activities (e.g., if they’re involved in sports activities).
Emergency kits are “plan B”
Low blood sugar, known as hypoglycemia, is the biggest immediate danger for people with Type 1 diabetes. Left untreated, it can cause light-headedness and fainting, leading to coma and death, because a lack of glucose in the bloodstream causes the brain to shut down. A low blood sugar emergency kit can therefore be a life saver.
Ravinatarajan says some pharmacies will assemble an appropriate emergency kit. Most components, such as glucose pouches (i.e., gel packs) and tablets, are inexpensive and available without a prescription. However, an injectable, like the one Scott wishes she’d had on hand, requires a prescription.
There’s good reason to include an injectable in an emergency kit, says Ravinatarajan. While older children can start to recognize Type 1 diabetes symptoms of low blood sugar and reach for juice, a cookie, or a glucose tablet to treat it, it still takes three to five minutes for their bodies to metabolize what they’ve eaten before it reaches the bloodstream. If the body doesn’t metabolize the food in time, they may feel faint and lose consciousness. Once someone is unconscious, Ravinatarajan warns they could choke on any drink or food you try to put into their mouths, so an injection that delivers glucose directly into the bloodstream, such as glucagon, could be the only option.
Even with an injectable on hand, Ravinatarajan emphasizes that, post-administration, it’s essential to call 911 to get that person to the hospital so doctors can make sure they’re stable.
Tools empower children and parents
Children with Type 1 diabetes and their parents have an extra layer of work to do every day – but also when something out-of-the-ordinary comes along. For example, when children with Type 1 diabetes get a viral infection with vomiting or diarrhea, it’s important they stay hydrated – as would be the case with any child – but also vital to monitor blood sugar levels and adjust insulin doses when food isn’t staying down. These additional concerns mean advice from a physician is often needed when a child with Type 1 diabetes is ill.
Insulin pumps, CGMs and emergency kits available through group plans – like the ones Manulife administers – allow older children “to be more empowered in their own lives to manage this condition so it doesn’t impede them from doing anything in life that they enjoy,” says Ravinatarajan.
They also help parents who, for example, no longer need to check in with the daycare, school, or babysitter to see how their child is doing. Instead, they can see their child’s interstitial fluid glucose levels in real time, and they can even set up notifications on their mobile device that alert them when glucose levels drop to unsafe numbers.
“Are [teens] indulging in something they’re not supposed to? It helps [parents] have those conversations with their children – whereas previously you wouldn’t know if this was happening,” Ravinatarajan says.
Ravinatarajan suggests employers can support employees with children who have Type 1 diabetes by offering a generous number of personal days and sick days, and understanding parents may need to attend more than the average number of doctor’s appointments with their children or respond quickly to an alert on their phone or a call from the school.
Diabetes support through the group benefits plan
Beyond openness and awareness, she recommends employers look at what their benefits plan covers and doesn’t cover. When applying maximums, consider that making tools/devices available to parents has the potential to pay for itself in reduced absenteeism and presenteeism.
Today, both of Scott’s children are healthy grown-ups who manage Type 1 diabetes for themselves. She vividly remembers some scary and painful moments, like giving her two-year-old daily needles that made him cry and watching her eight-year-old have a seizure after swimming at the cottage used up too much energy (fortunately, apple juice and a visit to the cottage hospital emergency department resolved the situation). But she’s grateful that her sons are now knowledgeable adults who have access to the tools they need to check their blood sugar levels easily and often so they can manage them accordingly.
“When people have young children with [Type 1 diabetes], it’s devastating and can be quite scary,” Scott says. “I try not to be a helicopter mom – I don’t want to insert myself into [my adult sons’] lives too much. But I do think about them with concern for their health and how they’re managing their diabetes in terms of their own ongoing worry and time spent, as well as the financial implications.”
Frequently Asked Questions
Type 1 diabetes4 may also be referred to as juvenile diabetes or insulin-dependent diabetes. People with this autoimmune disease, which most frequently develops in childhood, can’t produce insulin to regulate blood sugar because their own bodies attack the pancreas. Type 2 diabetes, also known as adult-onset diabetes, most frequently develops in adults, though children can get it as well. People with Type 2 diabetes have trouble using the insulin their pancreas makes or their pancreas isn’t making enough insulin. As a result, they too can’t properly regulate blood sugar.
Type 1 diabetes causes are uncertain. The disease tends to run in families, so genetics likely plays a role. However, according to the Juvenile Diabetes Foundation, 85% to 90% of people who receive a Type 1 diabetes diagnosis do not have any family history of the disease.5 Every year, Diabetes Canada funds research into the causes of diabetes, as well as screening, complications, prevention, treatment, and – the ultimate goal – a cure.6
At present, there is no Type 1 diabetes cure. However, research is ongoing, with promising results emerging from clinical trials using mesenchymal stem cells (cells that can form many parts of our anatomy) in animal models.7 Canada, the country in which Frederick Banting and Charles Best discovered insulin in 1922, is playing a leading global role in diabetes research.12
Type 1 diabetes is an autoimmune disease in which the immune system mistakenly destroys the beta cells that produce insulin in the pancreas. As a result, insulin production stops. Without insulin, the body can no longer use glucose in food for energy, so one sign of Type 1 diabetes is that blood sugar levels rise. Type 1 diabetes symptoms may include unusual thirst, frequent urination, weight loss, extreme fatigue, blurred vision, frequent infections, slow healing, and tingling or numbness.8
Type 1 diabetes treatment includes insulin delivery through daily injections (e.g., using syringes, insulin pens or an insulin pump). To make sure they get enough, but not too much, insulin, people with Type 1 diabetes need to carefully monitor their food intake, exercise levels and blood sugar readings throughout the day.9
Taking more insulin than required based on what you eat or how active you are can result in low blood sugar (hypoglycemia), which can cause a range of symptoms including sweating, chills, dizziness, trembling, weakness, nausea, headaches, a faster heart rate, pale skin, restless sleep, and nervousness or irritability. Without immediate treatment, hypoglycemia can lead to death.10
Taking too little insulin or leaving diabetes untreated can result in high blood sugar (hyperglycemia), which can lead to heart disease, stroke, high blood pressure, kidney disease, neuropathy, eye problems (e.g., retinopathy, macular edema, cataracts and glaucoma), oral health problems, foot problems (e.g., ulcers and infections leading to gangrene) and skin conditions (e.g., dry skin and infections). 10
Sources:
1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6750203/#; 2019
2 https://my.clevelandclinic.org/health/articles/22283-glucagon#:~:text=Glucagon%20is%20a%20hormone%20that,hormone%2C%20decreases%20blood%20sugar%20levels, 2022
3 https://www.sickkids.ca/siteassets/care--services/clinical-departments/endocrinology/how-to-give-an-emergency-glucagon-injection.pdf, 2015
4 https://www.jdrf.ca/t1d-basics/what-is-type-1-diabetes/; undated, accessed October 2023
5 What is diabetes? - Diabetes Canada; undated, accessed 2023
6 https://www.diabetes.ca/research/grants---awards/currently-funded-research, 2023
7 https://www.dvcstem.com/post/can-stem-cells-treat-diabetes; 2023
8 https://www.jdrf.ca/t1d-basics/what-is-type-1-diabetes/; undated, accessed October 2023
9 https://www.diabetes.ca/en-CA/about-diabetes/type-1/symptoms; undated, accessed October 2023
10 https://www.jdrf.ca/t1d-basics/what-is-type-1-diabetes/, undated, accessed October 2023
11 https://my.clevelandclinic.org/health/diseases/21500-type-1-diabetes; undated, accessed October 2023
12 https://insulin100.utoronto.ca/, 2022
Elizabeth Scott participated in this report on a volunteer basis and received no payment or other remuneration for doing so.
